I spent 9 days in the hospital after developing hemolytic anemia after one year W&W. A blood transfusion helped, but not enough. I had my first of four Rituxan infusions in the hospital and one outpatient thus far. Numbers are improving and no adverse reactions. I now have a CLL specialist, Dr. Scott Huntington, Smilow Cancer Center, Yale New Haven Hospital CT. No palpable nodes, but a contrast CT scan revealed some visible nodes and slightly enlarged spleen. No other physical symptoms. I meet with the specialist Wed to find out the genetic info missing from my original flow cymmetry.
At last week’s infusion, I was told I could shorten this week’s infusion by accepting an injection of the Rituxan in my stomach if my insurance approves it. Risk is infection/cellulitis, which would be treated with antibiotics. Does not seem worthy of the risk. Anyone had any experience with this shortcut?
Thank you, and bless you all.
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Goopteal
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I don’t think the question is about IVIG. It’s a Rituxan question. I’m not familiar with switching from an infusion to an injection for this type of drug.
I have had two rounds of rituxan. Never an injection. One round was for AIHA the other was 3 years later I developed ITP.
I believe eventually cyclosporin put me into remission from AIHA with a slow taper. Everyone is different. If the CLL needs treating then sometimes that can also treat the AIHA. I know another who was treated with venetoclax and obinatuzamab and her AIHA resolved. Hope this helps🙏
Thank you for reaching out. The hemolytic anemia came out of the blue. (My CLL specialist said there is no way to predict this rare complication.) He confirmed today that we will stay on course with two more infusions. He is hoping this will fix the anemia and put me back in W&W.
it does come out of nowhere. I am sorry this has happened to you! However, I have been in remission now for over 3 years and CLL not needing treatment. Ritixan kicks CLL back too somewhat. Best of luck to you. 🙏
Thank you for the encouraging words. My nine days in the hospital were surreal. In my lifetime, I have been in the hospital to be born and to give birth to my 30-year-old daughter. My younger daughter was born in my bed unplanned after I waited and labored at home all night. I was raised in the sixties when my mother’s motto was to “put a band-aid on it and go back outside and play” — unless there was major blood or a broken bone protruding from your skin! I am now grateful for all of the wonderful new drugs — and May they continue to kick CLL’s butt for all of us.
I totally understand and was very similar to you in all natural beliefs and lifestyle. Now, I do rely on allopathic medicine because I have had to. It saved my life. Yes, there are side effects and I always try to minimize them through proper diet and lifestyle modifications. There are two groups that I love and find very helpful. Kicking cancer in heels and CLL sisters. Please look them up and join if interested. Great group of gals with lots of experience and positive attitudes!!
Thank you for the suggestions! Fortunately, my CLL specialist is open to my naturopath being part of the team, and he approved her supplements, including Reishi mushroom pills. My naturopath is licensed, trained with cancer patients and has other CLL patients.
My CLL Specialist is Dr. Scott Huntington at Yale-New Haven Hospital, New Haven, CT. He is a researcher and clinician who has been there for about eight years. I do not know his previous background as I came into the hospital under emergency conditions. I asked for a CLL specialist, and he was the one recommended to me by one of the hematology team. The doctor who recommended him to me assured me that Dr. Huntington works with MD Andersen, Dana Farber and Sloan-Kettering, so I would have access to clinical trials if I need them. The recommending doctor interned with Dr. Huntington, and he said that his own father was just diagnosed with CLL in Canada. He is trying to convince him to come to CT to see Dr. Huntington. All of this was very reassuring to me, as my previous hematologist, from whom I ran, was not a CLL specialist. Another advantage of Dr. Huntington is that he is young and at the forefront of the latest research. Likewise, the younger doctors seem to be more open to truly integrating naturopathic medicine.
Dr. Huntington also approved my use of ingested cannabis (not smoking) for sleep issues. I am not talking about CBD oil, which is useless. I am talking about THC in cannabis products from professional dispensaries. I do not use it every night. I know that I have read other opinions about cannabis use on this site, but that was the first time I saw anything negative about its use for cancer. None of the hematology team advised against its use.
One warning Dr. Huntington did give me was not to inject any herbal remedies under the skin. (This is not something I have ever done -- nor would I do it.) He said one of his patients went to Europe for injections under the skin of I believe it was milk thistle. It made the patient's CLL much worse.
Not sure if you got my last reply. Your specialist looks like a great doc! Do you want to communicate via FB messenger instead? I am not as familiar with this site and it seems like we have a similar condition.
I’ve thought about using mushrooms. Not sure though. I understand them to be an adaptogen, but afraid they can stimulate the immune system rather than calm it. Best of luck to you!!
I had the infusions with good results. I have never heard of the injection. I would not have gone that route. But that's just me. I wouldn't want to add to my troubles.
I agree! My doctor dropped the suggestion, and I am staying with the infusions. So far, so good in treating my hemolytic anemia. Bloodwork is headed in the right direction.
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